Total Disruption

I had migraines off and on as a teen and young adult, but nothing like this. I had a sub-mandular gland removed in January of 2009. In Feb. 09 I experienced a “Bell’s Palsy” like symptom and the ENT sent me to a Neuro friend of his because it had been 6-7 weeks after the surgery. The ENT didn’t think it was connected. The Neuro put me on Topamax 10 mg. Performed many test: EEG, Nuclear Spec Scan, CAT, blood work, and a bubble test for the heart. After the third dose of Topamax, I woke up that morning and was stuttering. I went to work as normal. About mid morning I couldn’t form a word!!!! Went to the ER where they gave me an injection after speaking to the Neuro that was treating me. Immediately a fire ant biting sensation was all over my body. Come to find out you do not give that injection without oxygen. I went the see the neuro two days later.

STILL HAVING TROUBLE FORMING WORDS!! He looked at me and said it was all due to a childhood trauma. I did some research with a pharmacist friend of mine and found out that the speech difficulty is a side affect and could be permanent. Needless to say I didn’t go back to that neurologist and do not recommend him to anyone.

After that I was stricken with head pain that would take me to my knees when it hit. Always on the right side of my head. It would last only for minutes. But would be so severe that I couldn’t stand. Months later I started having “shaking” spells and body stiffening to repetitive beats and flashing lights or for no apparent reason. Along with Migraines that would last for days. I was seeing a neurologist about 2 1/2 hrs. away from home at a University facility. I really liked him. He was caring. He listened to what I had to say, and didn’t act like I was making it up. We had the migraines somewhat under control with aura medication and Relpax. Then he took a job as Chief Medical Advisor at the University Hospital and closed his practice. The search was on for a new neurologist.

The shaking spells continued. I would not loose consciousness but would tremble or bounce for hours at the time. Every muscle in my body would spasm to the rhythmatically to the sound of helicopter blades or music. I would begin to stutter at the sight of flashing lights and then bounce. Migraines when they hit would last for weeks on end. I started seeing a new Neurologist 3 hours away from home. And was educated by him quite a bit. His patients in the waiting room loved him. His bed side manor wasn’t the best, but he was very smart and could multi task like no other.

We tried several medications over time for the various symptoms I was experiencing. Working on one symptom at a time. Most of the meds I would have a severe side effect. He was very quick to recognize it and stop the med. We even tried Botox injections to help with the migraine pain. And again sever side effects. The reaction to the last one was Jones’ syndrome. Tiny blisters all over upper arms and across chest and back. To which the local ER doctor said I was experiencing either sun poisoning or an infection. At least this neurologist had the guts to say, he was out of options. He didn’t know what else to do. He has referred me to a Migraine specialist 3 1/2 hours away, but our insurance doesn’t cover him. And the appointment isn’t until April 2012. However, I kept pushing until I got an appointment at the Mayo Clinic in Jacksonville, FL in November. Maybe they can find and answer.

Sometimes you just want to say dumb a$$ to local ER doctors!!!! The local ER doctors around here take a migraine attack as a drug fix. I just want to say and have said “I HAVE DRUGS! THEY DON”T WORK! STOP THE PAIN!!” One even said to me “Hello Hollywood” because I had my sunglasses on my face. I was not in the mood for that, and let him know it quickly. That is not something you should say to a patient that is in severe pain. It kinda makes them mad. We are not out for a fix. Most of us have drugs. GOOD DRUGS!!!! Sometimes that isn’t enough. I wish the medical field would educate the general practitioners on Migraine sufferers.

The seizure spells would come and go. Several in a month, and then months without one. But the Migraines were almost daily. Someone had to help me. The stress on family and my body was taking a tole. The last seizure I had was in Sept. of this year. The EMS team administered 5 shots of Valium (sp) with no relief of seizure. Don’t know what the local ER administered because I haven’t gotten that report yet. I was sent an hour away to a larger hospital that was better equipped to handle this condition. A seizure was enduced by lights in the ER and later to sound while hooked up to a video EEG. NO epileptic activity was noted. Which is a good thing but still doesn’t answer any questions. The neurologist treating me at that hospital recommended strongly that I take nothing for the Migraines except two times per week. I asked what about the other days? He said you take nothing. I asked what about reg Ibuprofen. He replied sternly, “YOU TAKE NOTHING!” Plus he referred me to a psychologist. Which I was against to start with, but it is good to talk to someone that acts like they care.

So here I am with Daily Migraines between pain levels 6-10 that I can not treat but twice a week. The pain is relentless. My mood is poor. If not completely bitchy. However, the phsyciatrist is putting me back on the same meds my previous neurologist put me on. HAHA He knew what he was doing after all. If I could just deal with the pain in some way. I am using ice packs, cold gel masks, and even heating pads.

I have lost time frames even months due to Migraines. Lost time with family. Special events. Can’t do what I use to do with my children or my spouse. Lost my business. I can’t even keep up with the household bills anymore. My life has turned into a dark room with ice packs and heating pads. Very few “good” days. Even on the good days I am scared to do some things because it might bring on a Migraine attack. I am not the person I was three years ago. I have had feelings of hopelessness, guilt (a lot of guilt), uselessness, and depression. I was not expecting for my children to have to take care of me at this time. I am fixing to turn 40. They are too young to have to deal with this disease.

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Comments

I am so sorry for your pain and sadness and understand what you’re going through. Most people who don’t suffer with migraines have no idea, and people tell me that includes a lot of doctors! Most of the drugs they use to treat – not cure – migraines have some pretty bad side effects and can be dangerous. Heart attacks and strokes with Imitrex types and they are just now admitting that you can lose your eyesight with Topomax type drugs from sudden-onset narrow-angled glaucoma. I just wish they would come out with something that is both safe and effective, but I haven’t heard of anything yet:( I’m not ready to take anything that dangerous yet, in spite of the pain and disability. All we can do is hope and pray.

Thank you for sharing your story! I can relate to your story in a lot of ways. I am traditionally “hard to treat” as I have adverse reactions to a lot of meds and no reactions to meds that work on “most” migraineurs. So, the doctors and neurologists are always annoyed with me. I, too, am young (33) and have children and have lost precious time with them due to migraine and feel depressed and guilty and wish they didn’t have to worry about me and take care of me. Hang in there. That’s all we can do.

I feel your pain Heather, wish I didn’t. Nothing I have found after close to 40 years of dealing with migraines has been a “sure fix”. Have gone from daily attacks to a few (3-5 days) a month. No meds have helped me in as far as preventing them. Exercise (not routine, just moving), diet & my mental mind set has allowed me to live with this condition the best I can. I have found limiting my stress, limiting trigger foods, getting a good nights sleep & controlling my environment as far as the temperature has been the biggest help for me. I do take Maxalt, Fiorcet & Zofran as needed, but find hot/cold packs, hot showers & cuddle time with my Frenchies help as almost as much. Some days, nothing helps, I deal. Sometimes I can even forget I have migraines until one hits. Couldn’t do that even 5 years ago. Hope you are able to get some kind of answer for your migraines, you may just have to try trail & error concerning the common daily things in your life. Every effect has to have a cause. My thoughts only. Best of everything dear.

Everything you said is so true. Primary care physicians are never educated enough, people label you as a “drug seeker,” you lose precious time with your children and family (I know that guilt all too well), and live in fear of the next, imminent attack. I wish I had something useful to say, but i’m in the same boat. I get seizure-like feelings that send electrical jolts through my body and make meunable to balance myself. Been through so many tests with no answers. I feel crazy. But you aren’t alone. The only person who can understand the pain of a migraine sufferer is another mograine sufferer. <3

Hey there, thanks for sharing your story. I don’t know if what I’ve done could help you, but I will tell you just in case. I was having daily migraines and taking imitrex. All of the preventative drugs gave me terrible side effects. I was so worried about taking imitrex all the time and nothing else worked. Eventually, after watching a few documentaries, I changed to a vegan diet, added fresh vegetable juice, eat mostly organic and started taking supplements (multivitamin, b complex, magnesium, b12, ginko, vit. c). I was trying to reduce inflammation through diet and I don’t believe just an “anti-inflammatory” diet is enough. Anyway, after 17 years of daily headaches, I now get maybe 4-5 per month and they have been mild. Check out the documentaries “Forks Over Knives” and “Fat Sick and Nearly Dead.” Good luck!

I am sooo sorry for what youare going thru. I also suffer with migraines and I can tell you they can be paralyzing. I also suffer from sever lower back pain and sciatica..there are times I can even get out of bad either due to the migraine or the back pain. I hate it because I have 2 boys, 7 and 2. My husband is great at helping with them , but htis isn’t ME. I used to be soooo active. I am trying to get help with my back now and my migraines I have taken everything you can think of, including Relpax. My Dr has had me take maxalt…which does work if I can take as soon as I feel the headache coming on.